A food allergy/intolerance nurse in every GP practice?

Michelle Berriedale-Johnson hears about an exciting new initiative.

Three years ago, concerned by the lack of sound information on food allergy and intolerance, the Foundation for Allergy Information and Research (FAIR) approached Professor Norman Staines of King’s College London. FAIR was already engaged with Professor Staines' department on a scientific research programme into food allergies.
There was general agreement that although there was a lot of anecdotal evidence of just how great the problems were; the differences between food allergies and intolerances were not often clear in people’s minds.

After much discussion with others in the allergy field, and with GPs who had an interest in this area, it was agreed that some research was necessary to find how great the problem was, and how it was being met at primary care level. To this end, FAIR commissioned Professor Jane Ogden of the Department of Psychology at the University of Surrey, to conduct a two-year practice nurse programme to investigate. Professor Ogden engaged two research assistants, Joe Pope and Mia Nelson, and four nurses, who were based in primary health centres in Birmingham, Glasgow, East Anglia and London, in an attempt to establish the extend of the need.

The idea behind the research was that if some very basic help and advice were available at their GP’s surgery for those who feel that their health problems are caused by a food intolerance, the simpler cases could be dealt with there and then leaving the more complex cases to be referred on to the appropriate specialist.

At the moment, those who feel that their ill health may be due to a food allergy or intolerance can neither get, nor expect to get, very much help from their local health service. As a result they frequently self-diagnose and restrict their diets. While this may harmless, or even be beneficial for some, there remains a danger that some may restrict their diets unnecessarily or inappropriately, thereby failing to get adequate nutrition, or that some more serious underlying cause for their ill health may go undiagnosed and therefore untreated.

Doctors' views
Preliminary in-depth interviews with GPs suggested that although they recognised the existence of food allergies, and they accepted food intolerance as a factor in some recognised conditions, they were sceptical about the more generalised non-specific intolerance of which some of their patients complained.

However, where they were unable to identify any other organic cause for the patient’s malaise, they were prepared to use the term ‘food intolerance’ as a non-specific diagnosis. In the interests of maintaining a good doctor–patient relationship, they did try to work with the beliefs of patients who perceived themselves to be food intolerant, although they felt that neither they nor the NHS really had suitable services to help.

The proposal
The proposal is that each GP practice should have one nurse who undergoes a basic training in food allergy/intolerance. Each practice would offer a clinic (half a day/one day once a week/month/three months) according to need. Patients would be offered relatively long appointments during which a detailed history would be taken. Based on their medical and dietary history all patients would be put on a ‘healthy eating’ diet which excluded all additives, and reduced junk food, sugar and fat, for a two-week period.

After two weeks they would return for re-assessment and if they had not got any better (see below) they would be put on a wheat and dairy-free diet for two weeks. If, on the elimination diet, they were still no better they could be referred on for further investigation.

To evaluate the feasibility and usefulness of this service the researchers first developed a postal questionnaire, which went to 6,500 patients and which was returned by approximately 2,400, of whom 377 (18%) reported food allergy and 734 (33.5%) reported intolerance. The most commonly reported culprit foods were shellfish, fruit, nuts and eggs (for allergy) and dairy and grains (for intolerance). Very few of them had taken any sort of tests or sought any help from the health services, but of those reporting food intolerance, 70% said they would be keen to attend a food intolerance clinic.

In-depth interviews were then conducted with some of the patients who had reported food intolerance symptoms. Most were self-diagnosed as a result of talking to friends or reading a book or article, and most had found that their symptoms improved if they avoided specific foods. The most common symptoms were stomach and bowel problems, tiredness and headache/migraine.

Evaluation – in practice
The four practice nurses working in the four GP practices were given basic training in food allergy and intolerance, general nutrition, ways to help patients to change their behaviour and dietary alternatives. Nurses were given guidelines to which they could refer during consultations.

Notifications about the clinics’ existence and invitations to attend were made through the initial questionnaire, posters, leaflets and fliers displayed in the GP practice waiting areas and through GP referral.

Patients using the service got either three or four one-hour clinic visits – a very generous amount of time compared to normal doctor visits.

Stage 1 – Healthy eating
The first visit was spent taking a detailed history of the patient’s eating habits and general life style. It was found that many patients had very poor dietary habits, excessively high in additive-laden junk foods, short on fruit and vegetables etc.

All patients were given a healthy eating/healthy living plan, advised to drink lots of water and reduce their intake of processed, fast and take-away foods, fats, salt, alcohol, sugar, chemicals and additives and to eat regular meals including plenty of fruits, vegetables and fish.

Of the 150 patients who completed the clinics in the four practices, 92 reported feeling significantly better after spending two weeks on the health eating diet. Of the 119 patients who were followed up after three months, 90% said that they had tried to continue to follow the healthy eating diet.

Stage 2 – Wheat and dairy-free diet
The patients who returned to the second clinic but did not feel any better after the two weeks healthy eating - 44 out of the original 150 - were then put on a wheat and dairy-free diet for two weeks. They were given recipes, suggestions for alternative foods and advice on how to cope with an elimination diet.

When they returned at the end of the two weeks, 49% felt that their symptoms had improved on the elimination diet. Three months after the second clinic visit, of the 37 patients who were successfully followed, 60% reported trying to stick to the wheat and dairy-free diet.

Cost effectiveness
Although the clinics were relatively ‘expensive’ in terms of the nurses’ time, treatment was, apart from printing a few diet sheets, cost free.

Out of the 150 patients who took part in the study, a total of 93 felt that their symptoms had improved. Thus, nearly 62% of the patients who took part in the study both felt better and, if they had previously taken their problems to their GPs without a satisfactory outcome, could now be discharged.

Although this was not the purpose of the study, it also means that if any of those 150 who failed to respond to either intervention could then be identified as needing further investigation for what could be a more serious problem.

Although the take up on the clinics was not massive (281 patients in total) expectation of help from their local health service by those with perceived food allergy or intolerance is extremely low. Were such a service to become established it would be reasonable to speculate that take up would increase as its existence became known.

Where now?
The work that Professor Ogden and her colleagues did to set up the study provides an excellent blue print for a rollout of such a service on a much wider basis. The Foundation for Allergy Information and Research is currently seeking funding to establish a training programme for practice nurses across the country. We understand that they have already had a very positive response from regional health authorities. We can only hope that they are successful in selling such an eminently sensible, helpful, supportive and good value service to GPs.

First published in 2008

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